Number of detetherings

[Guest guest]

Hi all, Happy New Years!

After a post Christmas visit to the NSG, sadly he did not laugh me out of

the office with my silly concerns of retethering. I really wanted him to

think me silly. I had my last detethering last March (06) and now I have

increased numbness, pain, etc...

Anyway, is there some limit on how many detetherings are considered

pointless? When is enough, enough? I have so much scar tissue now -- how

do I decide?

I have had 2 surgeries and was tethered in 3 places. The surgeries have

taken place in 3 years. The last one really helped with my Chiari but

seemed to make most everything else worse.

Of course, I haven't had my MRI yet, so perhaps I am just imagining the

worst. I will try to think more positive :-)

M.

[Guest guest]

I've had two surgeries, which is nothing compared to

some of the people here. Two is my limit. My scar is

7 inches long from just two surgeries. If I had a

third, the scar would be at least 9-10 inches, which

means that much scar tissue underneath.

Unless I lose some major function - like bowel

function - I am done with surgeries. My last surgery

didn't fix the big issue anyway, which was my pain.

So I have searched for ways to handle the pain. I deal

with the weakness and jello-flabby legs, and that was

my decision. It's very personal. If I were you, I'd

ask what will you gain from another surgery and can

you live with the results if you choose not to go

through with it.

At first, the catheter was the big " hurdle " . I got

past it. Then the dreaded handicapped placard. I got

past that. All I have left to face is wheelchair and

bowel/bladder incontinence - the wheelchair and the

bladder I can handle. I have pain, usually under

control, but not always. Not now. I'd rather live

with what I have, though, than face the possibility of

it getting worse. Like I said, a VERY personal

decision. You have to decide for yourself what you're

most afraid of if you go through with surgery again,

and can you live with that outcome, and what are you

most dreading if you choose no surgery, and can you

live with that?

Good luck with that decision. It's a tough one!

--- wrote:

> Hi all, Happy New Years!

>

> After a post Christmas visit to the NSG, sadly he

> did not laugh me out of

> the office with my silly concerns of retethering. I

> really wanted him to

> think me silly. I had my last detethering last

> March (06) and now I have

> increased numbness, pain, etc...

>

> Anyway, is there some limit on how many detetherings

> are considered

> pointless? When is enough, enough? I have so much

> scar tissue now -- how

> do I decide?

>

> I have had 2 surgeries and was tethered in 3 places.

> The surgeries have

> taken place in 3 years. The last one really helped

> with my Chiari but

> seemed to make most everything else worse.

>

> Of course, I haven't had my MRI yet, so perhaps I am

> just imagining the

> worst. I will try to think more positive :-)

>

> M.

>

>

__________________________________________________

[Guest guest]

I think this is an individual decision............different from case to

case.

For me, I've decided at this point that 2 is enough. For others, they've

decided that their 5th was enough..........and then there is anything

inbetween.

You decide based on your Symptoms, how they are affecting you, how

they are progressing(if they are), and your outcome(s) with previous

Surgeries.

Me

Nebraska, USA

mymocha@...

Anyway, is there some limit on how many detetherings are considered

pointless? When is enough, enough? I have so much scar tissue now --

how

do I decide?